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Thursday, May 26, 2011

Up to date

Brad says this website http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/ has the most up-to-date information.  It includes the drug Cooper is going to be taking, vigabatrin.  The drug was only approved in 2009 in the US, but has been used since the 80's in Europe, Canada, etc.



What is going on...

Cooper has been diagnosed with infantile spasms.  This is, by far, the worst thing that has happened to him.  His prognosis is terrible.  I honestly don't know what I'm going to do or how to handle this.  I told some friends yesterday that it would be better if he had cancer.  At least then, there is something to fight.  And an ending that involves a cure... or not.  This is all gray.  I can't go into specifics without crying again, but here is some info:

http://neuro.wustl.edu/patientcare/clinicalservices/pediatricepilepsycenter/patientfamilyphysician/infantilespasms.htm

http://www.ninds.nih.gov/disorders/infantilespasms/infantilespasms.htm

Monday, May 23, 2011

Dirty Bugs

Beverly is finally back from her beach trip, so I went to her house to catch up and walk with her and Graham.  It was great seeing her and we had a great walk!  I got home and fed and bathed Cooper, when I discovered a very nasty stowaway.  A tick (ugh!!) had lodged behind Cooper's right ear!!!  I remained very calm.  I got a tweezer, rubbing alcohol, and a cotton ball.  I pulled the tick out (head and all, thank goodness), and cleaned the area several times with alcohol.  Cooper was bleeding a little, so I put some neosporin on there and he went to bed with very little fuss.  Such a good baby.  Such a crazy mama!

Tuesday, May 10, 2011

It could be worse...

http://www.npr.org/2011/05/10/136137429/a-fathers-quest-to-help-his-severely-disabled-son?sc=fb&cc=fp

Cooper doesn't have this syndrome; I couldn't imagine if he did.  But this man raises similar questions to the one I ask.  He's been dealing with his son for years, though.  Cooper will hopefully move beyond this.

Monday, May 9, 2011

Commercials

There is a current Frosted Flakes commercial that I find almost impossible to watch.  In it, a dad is teaching his son how to catch a baseball.  It may sound strange that such a light-hearted commercial would cause me such anxiety, but every time I see it, all I can think is, "Will that be Brad and Cooper someday?"  Is Cooper going to be able to play catch, enjoy time spent with his father, heck, will he be able to eat cereal out of a bowl?  At this point, with Cooper eight months old and still not rolling over, sitting up, holding onto things, etc. this is a real concern for me.  The geneticists were frank.  We don't know and can't tell you if Cooper will be able to perform higher math calculations, carry on a normal conversation, or even walk.  Because he has no defined disorder (and so may just be ok too), they just can't tell me what to expect.  I am sometimes paralyzed with fear and anxiety over my child's future.  I wish I could fast forward a few years just so that I would KNOW something.  The not knowing is awful.

Sunday, May 8, 2011

Mother's Day

Happy Mother's Day!  My day has been great so far.  Cooper and I snuggled in bed together while Brad made me mimosas, banana and chocolate chip pancakes, and bacon.  He brought it to me in bed, and I ate while I opened a couple of presents.  Cooper and Brad got me a necklace and my in-laws got me a gift card to Massage Envy!  Cooper has been in a great mood this morning.  I have the Toddler station on Pandora and we listened to music this morning while I was getting him dressed.  I don't know what he thought was so funny, but he was laughing a lot!  So cute!

Being a mother has had its ups and downs these last eight months, but I wouldn't change a thing.  My baby Cooper is so cute and fun, and I love him more every day!

Friday, May 6, 2011

The Blahs

I will admit it: this week I have been in a funk.  After the first two weeks of "Cooper is in school" cleaning and distracting myself, I am still trying to figure out what to so with myself.  And this week, I hit a low.  I have spent a lot of time in bed, reading and feeling sorry for myself.  Blah!  I have got to force myself to do stuff.  I seriously need a hobby.  Ugh!

On a good note, I have worked out every day this week.  Yay!  And Cooper is looking so fat!  Much more baby-like.  Love it!

Monday, May 2, 2011

Big Boy!

Cooper had a weight check this morning at the GPC.  He weighed 15 pounds, 6 ounces!  That is three times what he weighed at birth!  He has also got longer and his head has gotten bigger!  He just keeps right on growing!  He also got his prescriptions for therapy, so he can finally start therapy today!